Reflections on Advance Decisions to Refuse Treatment and What the Future May Hold

A report from a public policy think tank in Wales has highlighted the need for more coordinated approaches to advance care planning. There is a need to focus on a subcategory of this very broad area: Advance Decisions to Refuse Treatment.

A report from a public policy think tank in Wales has highlighted the need for more coordinated approaches to advance care planning. There is a need to focus on a subcategory of this very broad area: Advance Decisions to Refuse Treatment. Intelligent electronic patient record systems are required, so that patient wishes can be accessed quickly and easily when needed. This is a complex area, and anticipating the plethora of possible healthcare scenarios has always been a major challenge.

A few years ago I had a request from a patient, with a terminal diagnosis, to help her fill in a form that stated she would not want to be artificially ventilated when her lungs inevitably failed. She wanted mainly supportive measures, and preferred, on balance, maximum conservative management over other measures like non-invasive ventilation or intubation. We talked about her ideals and her fears in depth. She had a wicked sense of humour and would often try to floor me with an off-the-cuff remark, for instance she wanted a cremation and wanted the urn to be placed in the office of a physician with whom she had, what she called, a love-hate relationship.

The conversation flowed easily, despite the gravity of the topic and her frequent need to catch breath at the end of each sentence; we discussed other challenging treatment decisions and potential scenarios, for example whether, when she really went downhill, she wanted CPR (she told me where to go), or intravenous antibiotics for a severe infection (yes, this was something she wanted doctors treating her to consider), or a blood transfusion if she became severely anaemic (again, she felt this was a reasonable intervention, although ideally at home). She also wanted active management of her diabetes at all stages of her life, even when she was unconscious.

She asked me what all these treatments entailed and I told her pros and cons, and what alternatives there were if she refused them. She listened, I listened, and we created a set of shared decisions. It led to a detailed written plan. It became clear that she had been concerned about receiving certain treatments in future, and the conversation helped. We created a legally binding document, and as she got frailer, it was to go with her everywhere.

The actual distribution of this document was a logistical challenge: she kept a copy, I sent it out to her GP, but sharing it more widely became problematic; for example, the out-of-hours GP service at the time had no facilities to store such a document (even electronically) and sharing this with the ambulance service involved more forms and phone calls. Also, this lady knew what she wanted for some of the more common situations that may conceivably have presented themselves in future. But planning for all eventualities that complex, life-limiting illnesses can bring up remains a major challenge.

I have highlighted this lady's care planning because we are struggling to anticipate and plan for those times when we become so frail, that we are no longer able to speak, let alone make complex treatment decisions, for ourselves. A report from a think tank has suggested a need to tackle this, and asks challenging questions. The Public Policy Institute for Wales (PPIW) has published independent advice on how to increase the understanding and uptake of Advance Decisions in Wales. The PPIW worked closely with Professor Jenny Kitzinger (Cardiff University) and Professor Celia Kitzinger (University of York) to examine the literature and evidence, as well as undertaking engagement sessions. This coincided with an announcement from Welsh Government of a new health and social care act, which has put forward strategies for those individuals in society who are frail and require detailed health and care planning.

The PPIW report focuses to a large extent on Advance Decisions to Refuse Treatment (ADRTs), and recognizes these as a distinct entity within the broader context of Advance Care Planning. It goes further in clarifying some of the confusion around this terminology right down to how it is often misspelled and how terminology is misused. Whilst Advance Care Planning (an umbrella term for many different aspects of anticipatory forward planning in healthcare) is a topic that involves much of my work, I would like to focus more specifically on the important subcategory of 'Advance Decisions to Refuse Treatment'.

What are Advance Decisions To Refuse Treatment (ADRTs)? You may not have heard of them, because they remain quite rare. They are legally binding records (given statutory force by the UK's Mental Capacity Act 2005) of the treatments that someone wishes to refuse if they lose capacity to make their own decisions in future. An example of such an ADRT given in the report, might state, "I refuse a feeding tube and all other life-prolonging treatments if I am diagnosed by two appropriately qualified doctors as being in a prolonged vegetative state". This would be a valid and legally binding Advance Decision to Refuse Treatment in England and Wales if it were signed, witnessed and included a statement to the effect that 'this decision is to apply even if life is at risk'.

Whilst this would seem a sensible way forward for many, there are some definite challenges in implementing this into healthcare more generally. Some of the patients I have discussed this with say that they would be afraid or worried about filling in such a legally binding document, depending on what it actually aims to achieve. For them, the 'What if...?' question looms large; if an emergency arises, there are thousands of different scenarios and consequences that can play out, that may not be sufficiently addressed by what is essentially a limited set of words that were written down some time in the past. This is borne out in the PPIW report, where results of a large European study suggested that only a minority of patients would want to fill in an ADRT. (Daveson et al.)

There is also the level of detail. Even if an Advance Decision to Refuse Treatment is on the face of it quite explicit ("Please do not artificially feed me if I were to have a stroke"), there are scenarios where, if and when a stroke were to occur, this decision may have to be revisited: 'stroke' covers a plethora of mild to extreme dysfunctions; the brain is large and a stroke can affect many different areas. So for example if the stroke 'merely' left the person with the inability to express themselves verbally and swallow food safely, they may, quite reasonably, want to revoke their last (legally binding) wish and consider a naso-gastric feeding tube, especially if they feel hungry and hoped for some recovery; yet their inability at the time to speak might confuse the situation legally. I think this underlines the level of infinite possibilities and natural uncertainties within modern healthcare, and many people might want all options to be explored, should they deteriorate. And people often feel differently, when in a situation, to the way they predicted they might feel. Here, an ADRT might be considered too rigid and inflexible for some, if it is not worded to a very specific set of circumstances. A case of too many possible choices.

So what choices do people have if they feel strongly about anticipatory refusals? Some patients will create an ADRT for a treatment under very specific circumstances (that may never occur), and feel reassured that they have covered this feared scenario. Other patients may prefer to fill in a written statement of their values, a so-called Advance Statement of wishes and preferences.

Advance Statements also fall under the umbrella terminology of Advance Care Planning, and are a 'light' version of ADRTs. However, a healthcare professional is not legally bound to adhere to a Advance Statement, and is required to make a decision on balance of all risks and evidence presented in a given acute situation (in fact this is of course always the case, but a Advance Statements would form part of the evidence gathering process). This limitation in the document's legal status is important, if abuses of such a system are to be factored in. - let's not forget that any document can be falsified or even added to later on, by next-of-kin with their own agenda. You may think I am being dramatic, but I have seen such situations play out.

In fact, most patients I have spoken to would prefer for their next-of-kin to make decisions for them, when they themselves are unable to. The report highlights that relatives and next-of-kin do not have an automatic right to refuse treatments on behalf of the patient who is no longer able to decide for themselves. So an important recommendation must be to advise people who are at risk of their health deteriorating (in particular in my field of medicine), to consider appointing a Lasting Power of Attorney for Health and Welfare and how to go about this. (More information here, if you are interested.) This trusted individual , properly registered with the office of the Public Guardian , can then make and assist healthcare professionals in the complex decisions that may loom ahead.

And then there is urgency. The big challenge is that in some circumstances there is the juxtaposition of urgency versus the very reasonable need to address prior decisions. Emergency care at times has to be delivered at very high speed. If I, as a doctor, or any other person who arrives at a scene, don't act swiftly, then life or body function can be lost in seconds. Checking whether someone has an Advance Care Planning document (be that an ADRT or Advance Statement) on them, verifying that it is correct and abiding by it can take minutes. As an example, if a person is bleeding profusely, minutes are extremely precious, so most paramedics, nurses and doctors would quite rightly wish to give emergency treatments. Verifying identity is another matter. During the Paris terrorist attacks, the identity of many patients treated in hospitals was not known for days. The healthcare staff had a duty to care and treat urgently, before they even knew the name and details of the individual that was being brought through the hospitals' doors. Any number of them could have had a previously filled in ACP document. You can picture the scene: a Jehova's Witness, perhaps, who received emergency blood transfusions whilst unconscious, who had previously specified in an ADRT that he/she would never wish to receive blood. I have worked in accident and emergency as a junior doctor, and the number of times a critically ill 'Unknown Patient' has come in is not to be discounted. Even with the best electronic communication of ADRTs, staff wouldn't know who to look up on the computer. Healthcare professionals have a duty of care to save life first, and in an emergency seconds count. Doctors and healthcare professionals can only abide by the wishes in ADRTs if they know of their existence, so making documents readily and quickly accessible will be a key priority.

Back to tattoos then? Not quite. But if ADRT documents do remain rare in today's healthcare landscape, then part of it is due to the complexity of where these written decisions can and should be stored, how accessible they are and who should have a copy. And what happens if part of the plan changes? Patients may of course change their minds about refusing certain treatments. All this is difficult if you are relying on paper files, in particular if you have to send an updated version to all healthcare providers regularly. Without wanting to sound flippant, it would be unhelpful to have a situation where the patient holds ADRT version 4.0, the GP has version 2.0 and the neurologist has version 1.0 of the document.

There is an emerging consensus that electronic solutions will facilitate and empower patients and families to have a voice, be more practical in terms of updating and maintenance, and for me this has to be one of the salient messages in this report; if we had a single electronic care record service for patients, from which an existing ADRT can be accessed by GPs, ambulance crews, hospital teams and individuals themselves, and if it were possible to do this quickly in emergency situations, then this will address some of the significant practical challenges I have outlined above. This will involve a joint effort, and is and will remain a big agenda item for policy makers in Wales, but it is well worth pursuing.